Life on the Spectrum

Growing up undiagnosed

I sometimes wonder how much my life might be different if I’d been diagnosed as an Aspie when I was a kid. Asperger’s didn’t exist as a diagnosis till I was in my 20s, and I didn’t get diagnosed until I was 35.

I often think that I’d be better off today if there had been some sort of intervention when I was a kid, someone to teach me social skills, someone to prod me to take a shower more often than once every couple of weeks, someone to teach me what is and isn’t appropriate to say in polite company rather than just scolding me after I said something inappropriate in polite company.

However, I grew up in a small town. I don’t know if I would have received those kinds of services in my small town. Would my parents have been forced to take me out of town every so often to get help for me? That would have been hard on them, though I might have enjoyed getting to go on trips.

I wonder whether it would have helped my social isolation at all. Would intervention to help my social skills have improved my ability to get along with my peers, or would I have been placed in some sort of special ed class, which would have created even more barriers between me and other kids? When I was in the primary grades I was sent to something called “learning assistance” to work on my fine motor skills — mostly my extremely bad handwriting (technically, printing) skills. This probably helped to get me labelled “retarded” by my classmates.

After I was diagnosed with juvenile diabetes around the time I started school, my mother became very protective of me — somewhat overprotective. I often wonder whether my having a diagnosis of an autism spectrum disorder would have made her even more overprotective.

Of course, I will never really know what my life would have been like had I been diagnosed with Asperger’s or an autism spectrum disorder when I was a child. I grew up in the 1970s when there just wasn’t the awareness of learning and developmental disabilities that there is now. Add to that the fact that I lived in a small town, and you can understand why I was never assessed for any kind of disability. There were kids who were “retarded” and kids who were considered to be “slow”, but I never heard of anyone having a learning disability, never mind an autism spectrum disorder. Autistic kids were like Tommy Westphall on St. Elsewhere: they rocked, they stimmed, they stared off into space, and they didn’t speak, Maybe you read about them in books by authors like Torey Hayden.

I think a diagnosis might have helped me in some ways and hindered me in others. I don’t know that it would have my childhood any more difficult than it already was, though. In some ways I envy the kids who are being diagnosed today and, I hope, getting the help they need.


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